My son.

Yesterday,

Yesterday I posted a very negative post.  A post in which I expressed all the things I hate right now.

Some would probably have a hard time reading a post like that and I don't blame them one bit.

I hope the title was a fair warning.

Today I want to talk about the struggles involved with raising my son. 

In an earlier post I described his as PDD-NOS with ODD/CD.  PDD-NOS is a very complex condition as by it's definition, it's for persons who do not quite fit the diagnosis of other well defined conditions on the autism spectrum, but do have some aspects that are so strong, that they must be acknowledged as on the spectrum.

No two child with PDD-NOS is quite the same.  They all have various challenges, for sure, but the challenges vary.

It took years for the medical system to figure out what he had.  Why?  It took them so long because they never had him tested.  Why?  Well because as he is PDD-NOS he happened to lack the most common sign.

My autistic son can make eye contact.  He does very good eye contact.  My son is also very smart.  In fact he is gifted in some areas, which means he was also able to develop all kinds work-arounds while he was younger.

As he grew older, some of those work-arounds started failing.  His frustrations started increasing.  People wanted my son to perform and act like other kids his age and he couldn't because of his developmental disorder.

History

• From the moment my son was old enough to walk; my son has had violent tantrums, often breaking things.
• My son would disappear within seconds, causing his caregivers to often search for him.  He would disappear when his caregiver would go to the washroom, or go get something in another room, he required constant supervision.
• Even though my son grew up in a bilingual environment, he always refused to communicate in French.
• My son however as a toddler was a very affectionate, loved cuddle time would often come to people in his life to hug them and kiss them out of the blue.  Physical contact has always been a huge need in my son’s life.
• My son has always been prone to taking things apart to study them.  It was very difficult to keep any toys and they would often be taken apart.
• When my son started school (kindergarten) he would not sit still and would bite other students
• In grade 1 my son experienced severe distress in school, he would try to jump down stairwells, he would scream, throw things, try to hurt himself and others in various ways.
• After many difficulties, including Children’s Aid trying to frame me for abuse, I finally was able to have my son seen by a doctor from Pierre Janet, they diagnosed him as a child with ADHD. 
• Since grade 1 I have been trying to get my son tested for a learning disability and for giftedness.
• While in grade one, my son was attending a French school in Quebec.  He was therefore being taught strictly in French.  While at a doctor’s office, My son picked up a magazine, found an interesting story and started reading it out loud to me.  Not only did he read very well and fluently, but the magazine was an English one.  My son had not realized the language of the magazine.  He simply read.
• By the end of Grade 1 my son was put on Ritalin.  We told my son it was a “magic pill” and it did seem to improve things.
• In grade 2, my son was put on Concerta by Doctor Aruju Gonzalo. He was also prescribed Clonodine to help his sleep and his chest pains.
• In grade 3 My son was referred to CHEO for the first time.  They confirmed the diagnosis of ADHD, but added ODD to his diagnosis by grade 4.  They took him off Clonodine and put him on Risperdone.
• While in grade 3, we bought a carpet steamer.  These things as you know come in pieces which need to be assembled.  While I was at the washroom, my son unpacked and built the steamer by himself, without any errors.
• From Grade 2 to this day, my son has been a victim of bullying.  His first school in Ontario took 3 years to recognize the bullying, however, they were always delayed in acting upon it.  “His name is a fag” was painted on a school dumpster and it took them several months to remove it.  I reported it to the school many times before anyone ever checked.  My son had an EIP done that provided him with extra support.
• In grade 6, he was transferred to middle school.  All his support was removed and the bullying intensified. They increased the dosage of all his medications, but my son kept getting worst.  In all communications with the school, they described my son as some type of demonic child, (A child I was not recognizing as my son did not display many of those behaviors ate home) My son was getting regular chest pains, he was barely sleeping any more, yet when trying to talk to the school about the problems they stated “there was no bullying” and the only problem was my son.  My son would come home with bruises from the bullying and beatings. He decided to stop taking his medications as things only kept getting worst.  He was suffering from the side effects of the medication but we were seeing no positive changes.  This became so horrible for my son at school that in May 2010, I pulled my son out of school and tried home schooling him.
• While home schooling, I noticed that my son was very behind in the things he was supposed to know.  My son had about a grade three level knowledge in all subjects, but read at a grade 9 level.  First order of business was to catch my son up in all subjects, while encouraging his reading skills. Even though my son was un-medicated, from May to July 2010, he was able to learn and advance from grade 3 to grade 6, with little support.  Once removed from School, my son’s anxiety went drastically down and he was sleeping through the night.  He was happier child, even though I had trouble getting him to do many of his non-school related chores.
• In August 2010, I gave my son an ultimatum, if he wanted to go visit his grand-mother; he needed to clean his room.  When he did not, our neighbour offered to take care of my son so I could visit my mother and not deny myself and my mother the trip. While I was gone, my son went into crisis mode, regressing to how he was in grade one, he refused to obey the neighbours, he told other neighbours that I had left him alone and was caught hanging out the window,  I was called home because he was threatening to kill himself.  We brought him to CHEO and they suggested a “reward program”.

Since my son was a toddler, I have tried various reward programs.  Reward program DO NOT WORK with my son.  My son refuses to work for anything.  He has a sense of entitlement that he believes everything should simply be given to him and he sees reward programs as an insult.  I have tried every variation, from the simple to the complex, they will not work.  I still have various reward programs in place.

Since January 2011, he has returned to school and things have escalated dramatically.

My son does not seem to understand human emotion in others.  He does not understand why things he does will have an effect on others.  When he steals things from another, he does not see why the other person is upset.  He wanted it; he took it, simple as that.  He feels like hitting someone for entertainment, why should it bother anyone?  He has extremely low impulse control, and frustration tolerance.  My son has been known to steal, from others and from stores. If you refuse him he will become violent.  If you take back from him something he stole from you, he will break things and attack you.  Calling you a thief.  He seems to enjoy the pain in others.

He sees everything as an attack and will attack in return.

My son has a very negative outlook on life.  In seemingly every situation he will jump to the worst possible scenario, complaining about everything.  He views school as a social punishment, a place of torture.  He will often refuse to attend, and will have meltdowns. (Rages, emotional distress, violence, threats, destructiveness).  At home he will play video games either on the computer, the game cube, game boy, DS.  He will barely eat or sleep, all he does is play video games, and will become increasingly belligerent when we try to make him stop playing the games.  We often try to make him stop to do things like eat, sleep and clean himself.  Unless reminded, he may not do any of these things by himself.  Even when reminded, he will often refuse.

My son has very few friends.  For the longest time he had none. Those he has currently also have social difficulties, miss social cues.  His friends are very much into video games as well so that when they are together; either they talk about video games or play video games.

My son can switch from extreme violent behaviour to sweet and loving within a moments notice.  He will act like nothing happened and will not understand why those around him are not in the same mindset as him.  Sometimes, he will not even notice that he had what we now call a meltdown.

Last fall, we applied to Section 23, for special schooling.  They have denied him.  Through CHEO, they were supposed to apply for a residential program to help my son catch up on all the things he missed out by the late diagnosis.  He was only diagnosed with PDD-NOS during the summer.  Nothing is happening.  The educational system throws the ball in the medical system's court, they throw it into community resource groups who throw it back into the schools court.

He is currently on Abilify and Adderall.  They tried Vyvanse to no avail. They tried many medications to no avail.

Meanwhile, my daughter and I struggle to deal with all  the problems my son is having/causing.  We have inadequate help.

My son has a non verbal learning disability and also meets the province's exceptionality criteria for something…

Thanks for reading!